www.saveonelife.net

Stairway to Heaven

The true result of endeavor, whether on a mountain or in any other context, may be found rather in its lasting effects than in the few moments during which a summit is trampled by mountain boots. The real measure is the success or failure of the climber to triumph, not over a lifeless mountain, but over himself: the true value of the enterprise lies in the example to others of human motive and human conduct.” —Sir John Hunt, leader of the 1953 British expedition that first ascended Mount Everest

In one week I will return to Kenya, for my fifth visit. And two weeks from today I will be somewhere along the Machame route on Mt. Kilimanjaro! I’ve been training hard these past two months with an excellent trainer. He’s helped me increase my endurance–rather than walk on my treadmill, or even jog, I set it at the highest incline, strap on ten pounds and my hiking boots, and “hike” for an hour, sweat pouring off me. The first 15 minutes are hard, but soon, it is a rhythm, and then it’s easy. I look forward to it the next day!

Check out my rainproof jacket, embossed with our Kilimanjaro logo, compliments of Neil Herson, president of ASD Healthcare and fellow teammate!

Twice a week I’ve been doing plyometrics, simple looking exercises that are deceptively hard. Dan’s license plate reads “TRNZ4MR” and he is a Transformer! I’ve shed 7 pounds of fat and have toner muscles. Just in two months! I have learned to love to eat egg white and protein bars, and no longer crave M&Ms, my stress food. I feel ready for Kili.

My daughter, feels ready too. She worked out with Dan once–and when she hit my iPod, which had been playing the Doors for an hour–the shuffle picked a song out of 4,200 songs… called “Kilimanjaro.” (Hear Twilight Zone music playing, anyone?)

Today we sorted through all our gear. It’s a lot of planning. We have to plan for 5 days in Nairobi, visiting hemophilia patients, the members of the Jose Memorial Hemophilia Society, the hospital and doctors. We’ll be taking visits to the villages, far from Nairobi. Then, we will leave on the 5th to fly to Arusha, Tanzania. The next day, we start our 6 day climb!

All of this benefits Save One Life and our Africa programs. All ten climbers are paying their own expenses. Every penny raised goes to the organization and to fund our programs in Africa. Please stay tuned as I hope to bring you stories of our adventures, and portraits of the people whose lives we touch. I am most anxious to see Peter, who has hemophilia, and his younger brother Zakayo, who was in a psychiatric ward when I visited him, a victim of the riots that broke almost two years ago. The ward was a grim place. His brother was declared “cured” but the family had no money to pay for his care. No money? No release. The poor young man was trapped in that place. We paid the $300+ fee to get this young man released to go home to his family. For us this is what it means to save one life. One child, one young man, one hemophilia patient at a time. They all have names and stories and our climbers will have the immense privilege to enter their world, and experience a little of what they endure.

Our climb up Kilimanjaro may be the hardest thing we have ever done in our lives, but pales next to the daily lives of those who live in poverty with hemophilia. Thinking of them makes our climb a stairway to heaven, as the money we raise will help ease their suffering. We get to relax after our six day ordeal; theirs never seems to end.

Please make a contribution to the fundraiser! 100% of your donation goes to Save One Life and our Africa program, and not to climbers’ expenses! Help change the lives of those in Africa with hemophilia–one at a time. Visit SaveOneLife.net and click “Donate”

Mountains Beyond Mountains

I broke in my new hiking boots on Mt. Washington, a 6,288 ft. deceptive mountain. It looks so harmless, yet is often rated one of the 10 most deadly climbs in the US. The strongest winds in the world were recorded at the top, at 281 mph. It sits at the confluence of three weather systems, and has a reputation for sudden changes in temperature, weather conditions and wind. You can start out at 80 degrees and sunny at the bottom, and within an hour hit snow, gale force winds and whiteout conditions.

I’m training for my Kilimanjaro climb August 6, trying to raise money for Save One Life, Inc., the nonprofit I started in 2000 to give financial aid through sponsorships to impoverished patients with hemophilia in developing countries. I have raised $140 so far, thanks to Barry Haarde, Cheryl D’Ambrosio and colleague and friend Michelle. This is my week to do some serious fundraising, so you may all be getting emails from me!

After reading about the treacherous weather, I wore summer clothes but packed winter gear in my backpacks, along with some survival items: matches, lighter, lots of protein bars, ponchos, waterproof coverings and layers of clothes. I drove 3 hours Saturday to the White Mountain range, stayed overnight and started at 8 am this morning. All smiles.

Within 15 minutes I was breaking a sweat and laboring with my breathing. This was way tougher than I had ever imagined! The trail is all rock—big rocks that make footing tricky. It’s not a lovely dirt trail under the pines; it’s rocky, rough and all uphill. Viciously up hill. I kept looking at my watch: 8:30, pant pant. 9 am, pant pant. I stopped over and over to guzzle water.

I found three slimy slugs on the rocks, really misplaced and in danger of being stepped on, and like the animal-lover I am, coaxed the creepy things on to a leaf and then relocated them off the trail, where they were safe. By 9:30 slug saving was no longer part of the morning. I had to save myself. My heart was about to explode out of my chest wall. I was drinking my water so fast I feared I’d have none left for the half way mark, where there was a pump.

With my calf muscles burning, I pushed on. Finally at 10:30 am I had made it to the half way point, where there was a cabin and yes, a water pump. The view was beautiful. The strenuous climb left me with no appetite. All I craved was water.

I set off again, once my heart settled down to a normal beat, this time feeling much better.

One of the guides told me that they get sunny, clear days about one day per month. Today was that day! The sky was crisply blue and there were no clouds. So this was the mountain that has taken 146 lives, and puts fear into climbers’ hearts? It seemed so peaceful today and all the hikers I met were in awe over the great weather.

The second half of the trip saw me leaving the woods, and entering a more barren terrain. Our path was called Tuckerman’s Ravine and I hiked right through the ravine. Suddenly it seemed almost impossible to push on. The steep grade made gravity like a huge magnet, pulling me down. My heart was pounding wildly. I had to stop every tenth step and breathe deeply over and over to calm it.

The trail turned into just a huge pile of rocks from millennia past. I focused so much on putting one foot in front of the other, that I lost the pseudo-trail twice. There are very faded yellow markers on the rocks (AMC should really repaint these!) but these are hard to see. Rocks and boulders everywhere and at times, you think you are just stumbling over the world’s biggest rock pile, going who knows where.

Eventually I came to the heart of the ravine, where miraculously, on a summer day, was a snow bridge—a huge sheath of snow suspended over the ravine! A blond-haired man, fit and daring, stood under the bridge while his girlfriend took his picture. I couldn’t bear to watch; I didn’t want to see this guy on 1,000 Ways to Die. The climbing was really tough and even the young people we met were struggling. I think this part was the hardest of the whole climb. At times we were going hand to foot, crawling vertically like Spider-Man.

Finally, around 11:45, I could see the summit, and those coming down gave us an encouraging “Just about 45 more minutes! You can do it!” Mt. Washington is like one of those crazy optical illusions: you think you are getting closer, but the closer you get, the further away it seems! By this time I was leaning on my trekking poles, gasping. Once I caught my breath, I pushed on.

It took me another 15 minutes or so but I made it. Really, I had no choice but to make it! There were lots of cars and tourists, as Mt. Washington has an Auto Road, and many drive their cars up winding, hairpin turns, 11 miles to the summit. I literally dragged myself across the parking lot… only to climb more stairs to get to the restaurant, gift shop and reservations for a van ride down. I have never breathed so hard in all my life.

But, having said all that, it was a fantastic experience! I learned so much about myself and what I need to know for Kilimanjaro.

Trekking poles are a must. They provided balance, and something to lean on when breathing hard.
If you can’t eat, an energy gel snack gave an instant boost while being easy to digest.
I don’t think you can drink too much water!
Good hiking boots are vital. Mine kept our ankles protected form sudden twists from slipping on rocks or stepping into little crevices.
Warm jackets; the wind picked up at the top and once I stopped sweating it got chilly!
Climb with someone, not alone. Especially at my age!

I need to hike more often. So, despite how tough this was, I will return probably next weekend, if the weather is good.

http://www.saveonelife.net/mt-kilimanjaro-climb.php
Please help support Save One Life’s Kilimanjaro fundraiser! Make a donation via PayPal in my name as a climber. Each climber pays for 100% of their trip to Kilimanjaro. 100% of your donation goes to our Africa programs and to Save One Life! My goal? Raise $5,000 to give towards college scholarships to young men with hemophilia in Africa, to help them pay for medical expenses and transportation. Please give today!

(Mountains Beyond Mountains is the name of a top-notch book by Tracy Kidder about Dr. Paul Farmer’s humanitarian work with TB and AIDS in Africa and Haiti. Read it! You’ll be amazed.)

This Time for Africa!


One month from today I will be in Africa, about to reach new heights, literally. I’m planning a huge mountain climb, up Mt. Kilimanjaro, the largest mountain in Africa and largest freestanding mountain in the world. At 19,340 feet, it’s colossal. We will start at tropical temperatures, and gradually progress up to Arctic temperatures, below freezing. It will take us six days: five up and one down!

Who are we? The nine other climbers are: my 17-year-old daughter; Eric Hill and son Alex; Neil Herson and daughters Britney and Kelly; Jeff Salantai, who has hemophilia, and Julie Winton, a nurse with a son with VWD. Jeff and I just met for the first time last week in San Antonio! He was the first person with hemophilia to climb Mt. Rainier last year!

Eric is president and founder of BioRx, a specialty pharmacy. Jeff and Julie are his employees. Neil is president and founder of ASD Healthcare, one of the largest distributors of plasma derived products and pharmaceuticals in the US.

Our goal is to raise money for Save One Life and its Africa programs. Save One Life is the child sponsorship program for impoverished children with bleeding disorders in developing countries. I’ve been traveling to Africa since 1999, and was the first person from our international community to travel to Kenya, Ghana and Tanzania. I’ve also been to Zimbabwe four times and hope to return again soon. We started outreach programs in Tanzania and Zimbabwe to help locate more patients. We also want to start a scholarship program for college age men in Kenya. They are all so lacking in funds, and it doesn’t take much to get them an education. Once they are educated, they have a chance at a better life.

Eric is a sponsor of two children through Save One Life Neil is one of our biggest sponsors at 49 children! Obviously they are deeply committed to our cause.

They must be to tackle Kilimanjaro. Long the focus of lore and legend, Kili is very special. And tough. While not a technical climb, meaning there will be no ropes or climbing gear, it is strenuous. The biggest worry is altitude sickness: migraine headaches that lead to vomiting and lack of appetite. Oxygen levels will be at 50% of sea level.

But I have hope. Chris Bombardier, a young man from Colorado, just returned from Kenya and I think is the very first American with hemophilia to summit Kili! His climb also raised money for Save One Life.

If you’d like to sponsor a climber, please go to our donation page. Please note that 100% of your donation goes to Save One Life and its African programs, and not to cover the costs of the climb, or airfare or anything related to the trip. Each climber pays for his or her own expenses. All funds raised are donated to Save One Life. It’s a huge commitment in terms of time, energy, and money for these climbers. Please give them motivation and support by pledging today!

http://www.saveonelife.net/mt-kilimanjaro-climb.phpa

Interesting Book I Just Read
Break on Through: The Life and Death of Jim Morrison by James Riordan and Jerry Prochnicky

Shaman or madman? Forty year ago today Jim Morrison died of “heart failure” in a bathtub in Paris, of a suspected overdose. His death is being honored around the world by tens of thousands who loved his music and somehow identified with this tortured poet-turned-rock star. It’s hard to see the poet when you read the account here which can make you wince: the drinking, the juvenile antics, destruction of property and disregard for the rights of others, including his own band mates who suffered six long years with their front man. Gifted with a gorgeous voice and even better looks, Morrison relished the role of star, but also sought solitude personally, and respect for his poetry. “The Lizard King” brought the Doors fame and a legacy in rock and roll history, but as much for pushing the envelope as for his lyrics. His on stage antics made him the first rock star to be arrested on stage; he had 20 paternity suits pending at the time of his death; he was banned forever in Phoenix. Now his antics look tame, but in the 60s, this was all new, and dangerous. Morrison took rock where it had never gone before.

Riordan was a Rolling Stone contributor, and interviewed Morrison. But the writing is choppy, perhaps reflecting two different authors’ styles, and references to current events—Vietnam, Charles Manson, Apollo 11—are stuck in the middle of the story, often without a connection, or when there is a connection, it’s contrived. Some of the statements are just ridiculous (No matter how he tried to avoid it, legal trouble followed Morrison [as though he were an innocent bystander] and then in the next paragraph, they relate how he was arrested by the FBI and held in jail for disturbing the staff and passengers on a commercial plane ride). The attempt to view Morrison as a shaman is a bit too serious, verging on hero-worship. Much of the material here seems to be pinched from other sources, though sources are often not cited. So this is not a well written or researched book, certainly not as good as No One Here Gets Out Alive. I prefer drummer John Densmore’s Riders on the Storm the best, for its candid and sympathetic view of a man, Jim Morrison, who vented his deep-seated angers at his audiences, and muted his insecurities through alcohol. What a waste: judging from the Celebrations of the Lizard today, he is still cherished as a star, marveled at for being truly innovative, and listened to with pleasure. He appalled and attracted. The world is ever fascinated by him. Morrison has influenced many rock stars since his brief life ended. And members of the Doors are still touring, as much as ever (I almost went to see Ray Manzarek when he was in Massachusetts in May–so sorry I missed it!) He always said he would be a comet: a brilliant flash, here for a short while, but leaving a lasting impression. How true! RIP, Lizard King. Two stars.

A Decade of Dedication!




Overcast skies gave way at the last minute to sunshine as 150 guests joined Thursday night to celebrate 10 years of helping children with hemophilia in impoverished countries at the Save One Life Decade of Dedication Gala, in Topsfield, Massachusetts. It was a wonderful evening and our first major fundraiser. (Photos: [top rt] Val Bias, NHF, Laurie Kelley, Maureen Miruka; [bottom rt] Usha (India), Adriana (Romania), Maureen (Kenya)

Guests came from Texas, Tennesee, New Jersey and Ohio in the US, and India and Kenya internationally. The attendees were a mix of corporate donors, individual donors and sponsors of children with hemophilia. Adriana Hendersen of North Carolina, dressed in traditional Romanian attire, represented our Romanian partners. Even the band, Wildest Dreams, included musicians with various nationalities, as they played “Save a Life” in honor of our achievement.

Chairman of the board Chris Lamb started the evening by thanking everyone for attending, thanking our corporate donors, especially Octapharma, which was our presenting sponsor of the event. He reminded everyone that while we are now sponsoring 758 children in 11 countries, we hoped to reach our goal of 1,000 this year. Executive director Martha Hopewell recounted how Save One Life began, after I had visited the home of Mohammad Ali in Karachi, Pakistan in 1999, and learned that only $20 a month would keep that 8-year-old boy in school, to give him a better life. Save One Life offers sponsorships for individual children with hemophilia in developing countries for only $20 a month.

Then Maureen Miruka, stunningly adorned in a traditional red Masai outfit, shared what life is like in Kenya with hemophilia, and how her two first-born sons died young of complications related to hemophilia. This compelled her to do something to change the medical system and to improve the lives of those with hemophilia in Kenya. She is now president of the Jose Memorial Hemophilia Society.

During a delicious dinner with complimentary wine, I then presented the awards: Program Partner of the Year went to Hemophilia of the Philippines-Cebu, particularly to Ms. Agnes Co who always provides her reports on time and completed, making our job easier! Sponsor of the Year went to Mr. Wolfgang Marguerre, chairman of Octapharma, for his sponsorship of 70 children. And finally, a special award went to my mother, Eileen Morrow, of Springfield, Massachusetts, who was in attendance, for her amazing donation. She has gifted 50 acres of land in Charlton, Massachusetts to Save One Life to start an endowment in my grandmother’s name. The land is worth about half a million dollars and represents most of our family’s inheritance. The endowment, the Florence Ashe Hogan Memorial Endowment, will yield investment returns annually which can be used for operating expenses at Save One Life.

Finally, my friend and colleague Usha Parthasarathy, shared our experiences together traveling throughout India last fall, and reminded everyone that India represents half the number of beneficiaries in Save One Life. It’s an important country and program partner, where great things are happening. For example, Avik, a poor boy from Calcutta whose father is a humble shop owner who sells tea, completed his Save One Life sponsorship by finishing medical school, is now a doctor, and he passed along his sponsorship to another impoverished family!

Wildest Dreams then performed “One Voice,” a song they had already written, but which happens to be the name of our newsletter!

Everyone commented on how classy the event was, what a great time they had, and how proud they were of Save One Life!

To sponsor a child in need: www.SaveOneLife.net

Thanks to the corporate sponsors, including Octapharma, CSL Behring, Baxter, Biogen Idec, Novo Nordisk, New England BioLAbs, Kedrion, FFF, ASD Healthcare and Pfizer, which made the event possible. Also sponsoring Founder’s Tables: Accredo’s Hemophilia Health Services, American Homecare Federation, Bayer Healthcare, Talecris and Kedrion, James and Heidi Ellard, Milton Kerstein and Kerstein, Coren and Lichtenstein, and Chris Lamb. BDI Pharma supplied gift bags and BDRN provided videographer services. Quality Graphics printed the programs for free and Cambridge BioMarketing provided gala design materials.

Great Book I Just Read
Wyatt Earp: The Life Behind the Legend [Kindle Edition]
Casey Tefertillera

Best known for his role in the legendary shootout at the OK Corral in 1886, Earp was more than the most famous US federal marshall. This book expertly follows his life from Kansas to Arizona to California, and his career as gambler, saloon keeper, security guard, federal marshall and small-time land speculator. He was a complex man: a Peacekeeper and expert shot who loathed to shoot; a lawman who loved to gamble and keep with prostitutes. A man who evaded bullets in the thick of a gunfight. A lawman who took the law into his own hands and led his famous vendetta against the “Cowboys” who killed his brother. No wonder he became an American legend through countless articles, movies, TV shows, and books.

This book is extremely well written and researched. Tefertiller is a journalist and is shows with his numerous references and objective style. I was fascinated by the political dueling newspapers in Tombstone and how this influenced events at the OK Corral and beyond. Tefertiller also gives an in-depth report of what happens after the shootout: the jail sentences, trials… things not shown in the glamourized movies about Earp. Most amazing is how trouble seemed to follow Earp, even years after the events in Tombstone.

The story of course is filled with real-life characters who are all now part of the legend of the Wild West: Doc Holliday, Johnny Behan, Curly Bill Brocius, Ike Clanton, Texas Jack Vermillion, Turkey Creek Johnson, Mattie, Sadie, and the Earp brothers–Jim, Warren, Virgil, and Morgan. While the movies, particularly 1993’s Tombstone, makes them into colorful characters, this book makes them real.

A highly recommended book for admirers and students of the American west and our cultural history. Four stars.

Our Heritage, and a Great Mother’s Day Gift


I had a lovely Mother’s Day with my three children, who accompanied me to Springfield to see my mom. After lunch, we went to the cemetery to see the grave of my Irish grandmother, who is our matriarch. There, my mother gave my three children a little family genealogy (which doesn’t include hemophilia, as apparently, we are the first!). I’m fourth generation Irish, and we have a huge clan in Massachusetts. I heard some stories I had never heard before; got to see the grave of my great-grandfather, Martin Hogan, which I never had seen before! And my children learned that I had two sisters who didn’t survive, and we visited their grave too. I took photos of the grave sites. It reminds me of how important it is to know where we came from.

In hemophilia, we are trying to do this with the movie Bad Blood, which is now being shown around the country, and with Barry Haarde’s Hemophilia Archives. Please check them out. And you can also read many books on the subject of our community’s past, starting with Blood, by Douglas Starr.

We can keep heritage alive in many ways, and one is in telling stories. I received a wonderful Mother’s day gift in the form of a story published in the Boston Globe today. Please read it (link below) to learn about our humanitarian work for children in developing countries. In it, you’ll read that on Thursday we celebrate our 10th year Anniversary for Save One Life, our nonprofit that helps children with hemophilia in poverty. We’ll be honoring my mom–who so generously is donating half our family’s inheritance to Save One Life in the form of land in Massachusetts–all we have ever owned of value–to start an endowment in my grandmother’s name: The Florence Ashe Hogan Memorial Endowment.

A wonderful way to help others and keep our heritage and family alive, through the strong mothers who founded them.

http://www.boston.com/lifestyle/health/articles/2011/05/08/faced_with_an_ill_child_and_little_information_she_chose_to_fill_the_void/?camp=misc%3Aon%3Ashare%3Aarticle

Book I Just Read
History of a Suicide: My Sister’s Unfinished Life
Jill Bialosky

I bought this book on my Kindle after reading a glowing review in a magazine, which praised the writing as well as the handling of the topic. Not the kind of book I normally read. In a nutshell, the author’s sister, Kim, takes her life at 20, following a life of paternal abandonment, at times absentee and mostly depressed mom, dropping out of school, abortion, cocaine, romantic loss and no spiritual anchors.

Bialosky delves deeply into reasons why, and examines her own relationship with her beloved sister, and her feelings of loss, guilt and shame. The book is at its best when it simply focuses on the real story—Kim. It wanders and loses focus when Bialosky tries so hard as an author to summon literary comparisons and strength from the classics: Melville, Shakespeare, Greek tragedies, and so on. She even reprints her own poetry on her sister from an early age. Sometimes it seems Bialosky is trying too hard to be a sophisticated writer by conjuring up psychological archetypes, when she should just tell the story from her heart and not her head. She’s trying to be a Thomas More (“Care of the Soul”) without the credentials.

But she does have credentials in heartache and the book conveys these. The book is less an insight into suicide itself, despite the statistics and reports offered to substantiate the book, than the personal story of Bialosky’s sister, who was in a downward spiral from an early age. I stopped reading after two-thirds of the way through, a thing I rarely do with any book, because I felt I was reading the same thing over and over and was not learning anything new. The book rambles, is a bit uneven, loses new insight, and tries awfully hard to be highbrow. But Kim’s story is deeply compelling. Two stars.

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